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The Australasian Menopause Society has a patient information sheet which is available to doctors and to patients online, and they can download it from the Australasian Menopause Society website. The International Menopause Society has similar guidelines. The International Menopause Society has a huge document on the use of menopausal hormones, the management of mid-life women’s health, which includes a section on POI.

There is an international POI association based in the United States. There’s the Daisy Foundation in the United Kingdom, and there’s the Jean Hailes Foundation in [city name], all of which provide useful, very helpful resources for women, but also for doctors. A lot of doctors can get very helpful information from those sources.

Although credible information sources about and services for EM exist, several health practitioners commented that they can be difficult to find, and that many women and health practitioners are not aware of them. Dr Richardson, a medical oncologist, suggested that it would be helpful to have online ‘a list of people that actually treat [EM] so practitioners would know – I know a lot of GPs that struggle with patients.’

Dr D, an endocrinologist, described the challenges of making ‘good resources’ on EM easier to find for both women and health practitioners.

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There are some good information sheets out there, and some good sources of information. It’s quite hard to find them, and when you look on the internet there’s a bombardment of terrible things that you see first, and there’s real lack of good information for very young women, for example I had a – well I’ve had a few teenagers. And to try and find information that is appropriate for them and where they’re at in life, it’s very difficult.

We need information for women. We need information for the health practitioner. And we need the health practitioner to know that there’s information for women, is the other side of things. So there is a national women’s health organization … committed to providing education to women mostly, but also to health practitioners as well. But their core business is for women.

And they have some very good resources already. It’s just a matter of women tapping into that and finding it. There are webinars now out there, there’s some very good menopause videos on the International Menopause Society, they’re YouTube videos. So I understand that at the moment in terms of education, the things that are reaching the younger generation are videos and webinars and those sort of things.

So it’s got to be digital and it’s got to be available at the touch of a touch phone or whatever smart phone. The trouble is that all of the other stuff gets in the way, and I don’t know how you solve that. But by having a place of repute, like this national women’s health organization, I think that’s a good start. GPs know about it, the women are knowing about it, there’s a lot of women on their database who get emailed with health updates regularly. So that awareness that there’s information out there.

There’s no one right answer here, it’s just trying to educate, trying to get the good information out there, and trying to promote research and so that there’s knowledge, and the knowledge is findable.

The importance of being able to refer women to credible sources of information, particularly in relation to helping them with decisions about treatment and care, was noted by a number of health practitioners. As Ms Hay, a breast care nurse, remarked: ‘that’s [the] importance of … being aware of what’s available, sharing it with the women and empowering them to make choices.’

For Dr Barker, a general practitioner, it is important to refer women to credible resources to enable them to make informed decisions.

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The issue about internet-based services is that you need to get access to quality information. And you can go by the Better Health Channel and that’s actually publicized at the hospitals as the way to go up there. We’ve got a number of sites like the Jean Hailes that we would use and Monash has got some good resources as well. And if people’s point of view, if they’ve been talking to people and they’re getting a biased point of view, we point them back in that general direction.

It’s changed from being doctor driven – “You will do this, this is your problem,” to the collaboration; discuss the symptoms, let the patients own them and then we find there’s far better – if the patient’s in control of the decisions and the results.

Several health practitioners emphasised that information sources need to be tailored for individual women, particularly younger women diagnosed with EM. In endocrinologist Dr D’s experience, ‘you don’t want to give [young women] things that are talking at an older age group, because it can be very overwhelming and frightening and they just don’t get it.’

Dr W, an endocrinologist, explained that there are few options for information and services targeting young women, and commented on the need for resources to help women navigate the healthcare system.

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I haven’t found any really good packs specifically for young women. I think that would be really helpful. But I think a lot of the information online – there’s some very good menopause information but it’s really targeted to older women and it’s quite a different experience for younger women.

So information packs, including things like fact sheets and services they could access would be good?

Oh absolutely. Absolutely. Also things like, you know, how do you access secondary services or allied services? So if you think you might need a psychologist or if you think, you know, ‘Oh, I want to see an exercise physiologist to learn some more exercises for my bone health,’ or something like that, how do you go about doing it? Because it’s a fairly complex system to access those.

I think it would be probably nice to have a better understanding or awareness of early menopause amongst health professionals at least. And it would be nice to have some sort of portal for patients to go to where they can either resources, where they can find out, you know, find lists of practitioners who might have knowledge in it and where they could perhaps connect with other people with the condition if they wanted to.

Because I think that lack of support groups, or even a Facebook group, is a bit hard for some people. But not everybody wants that sort of thing, but I think it’s – be nice for some people to know that, ‘Yeah, there are other people in the area that have what I have.’ And I found it quite surprising because, you know, there are so many things like Facebook groups and patient support groups for everything, but there’s just not for this sort of thing. It’s probably partly the time of life that women are so busy anyway and – I’m not sure.

For women experiencing EM following cancer treatment, a few health practitioners commented that information and services from organisations such as the Breast Cancer Network Australia, Counterpart and Think Pink were useful sources of support. Ms Hay, a breast care nurse, explained that some women may find ‘telephone support services [by] the Cancer Council’ helpful as ‘they’re coordinated by fully trained volunteers who have quite often … experienced a similar scenario’. However she noted that this option may not suit everyone as some women ‘get a bit tired of retelling their story.’

For breast care nurse Ms Lewis, organisations that support women diagnosed with cancer can be particularly useful for the management of EM symptoms as they promote lifestyle changes such as exercise.

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Here we have BCNA – Breast Cancer Network Australia – who provide lots of really good leaflets that are well-written, the input is from people that have had breast cancer, so it’s really well explained. There’s Counterpart, which again gives a lot of information. So, they can go into the centre and join in various groups, go to seminars, read up, and places like The Living Centre again provide some support. It’s more and more evidence coming through that exercise is an important part of recovery and there are lots of oncology rehab programs and again that is something that we would discuss with the patient because it helps with the fatigue. We know that exercise helps with fatigue, it doesn’t seem to make sense that it does, but we know that it does.